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11.07.2010

When will it be?

I've had completely amazing feedback from all my new blog readers, and twitter followers who found me through the BBC piece. I honestly never expected so many people to see it and find it so interesting! A huge thank you to everyone who sent a tweet or comment, I can't reply to you all individually but know that I love reading them all and REALLY appreciate all the love and support.

The BBC article has also gained me some other media bits and bobs which is great, this week I have been doing an article that will be going into the Sunday Times in a couple of weeks (I'll let you know when) it's been one of my favourite interviews :)I've also got a potential radio interview which I'm in the process of arranging which is all good awareness raising work.

I'm getting a bit more into my current uni course now too (famously last words!). I handed in my first essay of the course last week and am waiting not so patiently for my result to come through. I always find that I have a "why did I do this" few weeks when I first start work again and find it really difficult to get motivated but fingers crossed now one is done and dusted it will be slightly easier.

Healthwise I'm pretty much the same. It's so weird that these are a few months in which I thought I would be bored silly with very little to do but I seem to have had lots of odds and ends with interviews, hospital visits, friends popping in and dad taking a few days off so we can go shopping and avoid the crowds, that I've found myself pleasantly busy! Lungs are still very chanable on a hourly basis sometimes ok, other times tight, other times breathless. It makes me sad to know that I'm on more inhalers and meds than i have ever been and yet they have little effect now. Some days I take all my inhalers and 30 mins later have to remind myself that I've had everything because breathing is no easier.

Pain has been a bit of an issue, I get lots of back aches and my chest area aching and becoming very tight and spasming from where I'm sitting alot and the effort of breathing. Once everything starts to tighten you've had it everything becomes a viscious circle, breathing gets even harder, I get more breathless and panicky, lungs start to really ache and no matter how i sit/lie I can get no relief. So I've been relying on the painkillers to try and stop this before it gets too bad.Appetite hasn't been great either so I've been finding eating a struggle too. Some days I could literally just sit with a plate of food in front of me for hours without feeling any urge to eat some. I'm having to force myself a little bit more but without making myself sick, eating as and when I feel I can.

I've also struggled a bit more mentally the last couple of days, nothing as major as other times but a little wobble that is I suppose natural at this time of year. Halloween, Bonfire night just gone and Christmas fast approaching, means everyone seems to be enjoying these times while I'm STILL stuck on the sidelines. Going out is such an effort now. It's one of those times that inevitably make you think about life and how I hoped things would be different this year. I can be quite ok and then all of a sudden it will hit me that time is going by, first in days, then weeks then months, all without calls or a transplant. How much longer can it go on like this? How much longer can I cling on to my current level of health? Will a transplant ever happen for me? Even things like adjusting back into the "real world" after a transplant are pretty terrifying when you think about them in too much detail. I often feel everyone has there own expectations of what I will do and they don't always coincide with what I think I actually want to do. I've lived a restricted, often anti social life for so long, different from normal everyday life. It would be quite a shock to the system. Such a faraway prospect at the moment.

Whilst I attempt to contemplate your physical pain, its easy to overlook the mental pain of being stuck on the sidelines. For the record, you missed a traditional Halloween (Smurfs everywhere!) and two bangers and a Catherine wheel on Bonfire night! You'll love the 'real world' - its mostly dull with the occasional Smurf or firework to keep us on our toes!

You're doing a stirling job girly at keeping things in perspective and rational. I remember those really difficult thoughts, contemplating whether it will ever happen. You have to believe that it will button, as hard as it is. In the meantime, you keep shining. It sounds like between media work (can't wait to hear all) and uni work, you really have much positivity despite the grey clouds which are sadly part and parcel of the transplant journey. That exciting real world can take some real adjusting to post transplant but its full of the rewards that u deserve! Keep rocking chick! xxx

You are an inspiration. I read the BBC report and had to say how impressed I was ith your resiliance. I've posted you onto my FB site and only hope more people will sign up as a doner. Have a wonderful day Tor and thank you for doing what your doing.Paul

I am reading your last blog entry and just feel like you are describing my life and thoughts exactly! I haven't been too well this week so will send you a proper message soon when I can type for longer but just wanted to say that for about 6 months i had the most awful pains and tension everyday in my back and neck and chest and recently I made a few changes which has made it noticably better. Firstly I started taking an anti-anxiety medicine Citralopram and at the same time I found a massage therapist who has done a lot of pallative care work. Not sure which one helped the most as I started them at the same time but I feel so much better I can't tell you. Will get in touch very soon on facebook properly but in the meantime hang in there- you are an inspiration to me as I haven't been waiting half as long as you but I can only hope to cope as well as you are. xx

29 yEAR OLD, ASPIRING MUSICAL THEATRE ACTRESS! WITH A BIG LOVE OF PHANTOM OF THE OPERA,HENCE THE NAME OF THIS BLOG(A SONG FROM THE SHOW). I HAVE THE GENETIC CONDITION CYSTIC FIBROSIS WHICH WAS AT THE STAGE WHERE I NEEDED A DOUBLE LUNG TRANSPLANT TO SAVE MY LIFE. I RECIEVED MY MAGICAL CALL IN OCTOBER 2011. THIS IS A PLACE FOR ME TO RECORD THE HIGHS AND LOWS OF LIFE ON THE TRANSPLANT LIST, AND NOW MY NEW LIFE BEYOND IT.
Contact me on tremletttor@gmail.com